ECMO Survivors' Reflections on Their ICU Experience and Recovery.

Abstract

As pediatric mortality improves, approaches to pediatric critical care now focus on understanding long-term implications of survivorship on patients and families. We aimed to characterize how patients recall time spent sedated and recovering to identify areas for improvement in patient outcomes. We undertook qualitative analysis using semistructured interviews of pediatric patients requiring extra-corporeal support in our intensive care units from 2018 to 2023. All patients were English-speaking, >12 years old at time of hospitalization, and able to communicate at an age-appropriate level. Priority sampling was given to those with more recent hospitalizations to improve recall. Interviews were recorded and transcribed before thematic, inductive analysis. Forty-one patients met inclusion criteria; 14 patients were enrolled before achieving thematic saturation. Several themes emerged, centering on cognitive, physical, and socioemotional experiences during and after hospitalization. Notable findings include profound awareness under sedation, impaired sleep, challenges with communication, physical discomfort, frustration with activities of daily living limitations, and gratitude for provider and family presence. Postdischarge, patients highlighted persistent memory, concentration, sleep, and physical impairments, as well as emotional processing of their illness and mortality. Our findings describe how pediatric critical illness impacts short and long term cognitive, physical, and socioemotional outcomes for children in the ICU. Future research is necessary to study if there are specific, modifiable factors in patients' care that impacts their experience of critical illness, such as specific medication choices, diagnoses, communication styles, or physical and speech therapy interventions.